CT

Tomorrow we meet with the neurosurgeon again to get the results of the CT scan. I tried to get a copy of the radiologist's report so that I can have an intelligent discussion with the neurosurgeon, but they would not give it to me, or even tell me what it says. I am not impressed by this at all.

I need a doctor who treats me like I have a little sense. I want to read the report and research the terms before meeting with the surgeon, and I strongly resent not being given access to it. I am going to say this to the doctor tomorrow. I do not want a doctor who plays God and doesn't let me have access to medical records. We should be a team working together for the good of Weilong, and I should have every scrap of information available in order to make such an important decision for my precious little boy.

So, I have used my blog to relay my frustration. But if a blog is to reflect real life, then we must blog our frustrations as well as our joys and triumphs.

Yesterday Weilong and I spent 4 hours at the hospital. Weilong had what they called a stim test. It involved giving Weilong certain "agents" that should stimulate the production of different hormones over a period of a few hours. Blood was drawn every 15 minutes.

This was the first time I had seen my sweet son get upset over something. There was supposed to be only one needle stick to insert the IV. But his poor little veins collapsed twice, so he ended up getting the IV 3 times. He was furious with them. He kept saying, "You no good, you lie". We tried to explain to him but he refused to understand. He sat quiet and still and let them stick him again, but he was angry. He stonily watched a video the whole time, refusing to acknowledge that we were in the room. I left for about 15 minutes to go the the med records and try to get the aforementioned radiologist report, and when I returned my sweet boy was crying. His little legs were hurting. He gets this leg pain frequently, we think it is caused by pressure on his little spinal cord.

I rubbed his little legs and had him get up and walk, but nothing helped. It absolutely broke my heart to have him cry, but there was nothing I could do. As soon as the last blood was drawn I gave him a tylenol and we got out as quickly as possible. He fell asleep in the car on the way home.

I fed him a bowl of chicken noodle soup and and he cuddled up on the couch and slept until I had to pick up the other children from school, about 2 hours. Poor little boy was whiney for about an hour, but soon settled down and played the rest of the evening.

The kids played in the sandbox and got sand everywhere! Everyone had to shower and wash their hair and all their clothes had to be thrown into the washing machine. But I didn't complain because it was so nice to see Weilong playing and back to his normal cheerful self.

One big problem I have right now is that I want to keep WL beside me all the time. It is hard to let him play knowing he should not get any blows to his head or back. Little boys are so rough. Weifu got mad at Weilong and gave him a good swift kick right in the back. I have a rule at my house, NO FIGHTING. I talked with Weifu about it and reminded him of the rule. He refused to say that he would not hit or kick Weilong again, even after I gave him a time out to think about it. So, I must admit I gave him 2 licks with my paddle. I really hate to use that stinkin paddle, and haven't resorted to it in several months. It is used for willful, deliberate, disobedience only. I think it served its purpose in this instance, both of us cried and Weifu promised he would not hit or kick the others again. I know he doesn't understand why Weilong is getting out of school and going places with Mom. He doesn't understand that this is not a fun time for Weilong, he only sees that Weilong is getting a lot of attention right now. The girls are big enough to understand, but Weifu is not.

I am praying for wisdom and guidance right now. Not only for Weilong's situation, but for all the kids. I want them to have a fun summer, and to love each other and care for each other.

Medical update

Tomorrow I am taking Weilong for a CT scan of his little head. We have had several MRI's in the last two weeks, and yesterday we visited a neurosurgeon.

They tell us Weilong has Chiari Malformation 1, and a Cervical Syrinx. His pituitary is also small and isn't producing hormones properly. Tomorrow's CT is scheduled because there may also be something wrong in the occipital area. We will get the results of the CT sometime next week. I'm unsure of the day because Weilong's growth hormone test conflicts with his appt with the neurosurgeon so I will have to reschedule something!

I started to get concerned about our precious little Weilong a couple of months after we got home. All the other children had gained weight and grown taller quickly, but despite all the good food I was giving Weilong he just wasn't growing.

He has complained "my tummy ouch" almost every day since we were in China, and he throws up a lot. At first I thought he was eating too much, or that the food was just different. But limiting his food didn't stop the nausea. So, we had him tested for allergies and parasites. Both negative. I took Weilong back to the pediatrician several times over the following months just to document his lack of growth. We did a bone age xray and Weilong's bone age is 4 yrs 6 months. He is 8 yrs old.

Other physical symptoms we noticed were aching arms and legs, and headaches. Also, Weilong is not able to stand on just one foot, he cannot keep his balance.

The next step was a visit to the pediatric endocrinologist. We tested Weilong for chromosomal abnormalities and that was negative. Blood tests revealed his thyroid and growth hormones were very low. The doctor suspected a pituitary problem, so he ordered the first MRI. He also started Weilong on thyroid hormone and cortef.

The pituitary MRI showed that Weilong has CM1. So the next week we had a total spinal MRI. That is when the syrinx was found.

Reading back over this post, it seems so calm and unemotional. For the record, that is not at all how I feel. I have a terrible ache inside that just won't go away. There is no medicine for this ache, and even crying doesn't make it go away. I have only one source of great comfort. That is my faith in God. I don't know what I would do without that. And sometimes I'm ashamed that even though I know our lives are all in God's hands, I still am afraid for my precious son.

But I know whom I have believed and am persuaded that He is able to keep that which I've committed unto Him against that day.

Testing

Weilong has been having some tests run at the hospital. I'll write more about it when it isn't so painful for me. Our precious little boy captures the hearts of people wherever he goes. We are so blessed to have him.

High Winds

They wind blew our fence down! Just straight-line winds, but mighty strong ones. We even lost power for a little while. But all is well, the fence has been repaired and everything is calm now. Note that the cats didn't even bat an eye.